Sunday, December 15, 2013

How Do We Keep Going?

So I really shouldn't check my Facebook first thing in the morning, before my coffee, before I'm upright. 

That was apparent this week: 
I learned of a childhood friend who's husband is dying, and she will soon have to raise two young children on her own. 
I was reminded of the year anniversary of Sandy Hook. 
There was another school shooting.
A "Superman" in the body of a sick 9 year old boy that left us all too soon. 
It made me wonder why it was even worth getting out of bed?

Then I will hear these words from the other room, "Can I go potty?"

And all I can think next is, I love hearing him say full sentences.  

Better get up and make the coffee and start this day.

And I'll remember to not pick up my iPhone / Facebook until after I get a big hug from my sweet six-year old.

Sunday, December 1, 2013

A Headache of a Different Kind

The other day when putting my boy to bed, I asked him to stop working on a puzzle so we could go upstairs and put his jammies on.  He objected a bit, as he does every night.  But I reassured him he can finish tomorrow. 

Up the stairs we went.  We finished out nightime routine of washing up, brushing teeth, putting on jammies and reading two books.  As we were moving on to the final step before turning on music and going to sleep, which is getting a small cup of water, I turned around.  He was in tears.  Sudden.  Abrupt.  Makes your heart hurt, tears. 

I asked him what was wrong.  He couldn't answer.  Between the hyperventilating, all he could say was, "Nap." Nap is his description for "I'm sad and need a break."  So I took him back to his room and hugged him as tight as I could.  He was sad about something.  I couldn't figure it out. 

When he settled down a bit, I asked him again why he was sad. 
"I'm sad."

I know.  Is it school?  Is it friends?  Is it Mommy and Daddy?

"No.  Take a nap."

Tears again.

Mike came in to see what was up. 
"Jonathan, does your belly hurt?  Does your head hurt?"
Jonathan pointed to his head as the area that was causing him the discomfort. 
But this cry was not one of pain.  It was one of being sad.  He would stop crying, and then start again a few minutes later. 

Jonathan wanted me to write him a book.  He dictated it to me.  It was called "Jonathan is Sad."
It didn't provide much info, except "I crying.  I take a nap.  Mommy does breathing.  We will do yoga tomorrow.  The end."

So I tried again after about a half hour of on and off crying. 
"Buddy, what hurts?"
He pointed to his head.  Something in his head hurt. 
Could it be his brain?  Like something was left un-done?

"Buddy, do you want to go downstairs and finish your puzzle?"

We went downstairs and he finished the puzzle.  He looked at his finished piece, smiled and said, "OK.  Now we have water and go to bed."

His head hurt, because something was left undone. 
And it broke my heart. 
Little things, like an unfinished puzzle, can weigh so heavy on him. 
Sometimes we need to slow down; listen to hear what he is trying to tell us. 

Sunday, November 24, 2013

Thanksgiving Thanks

So obviously I have not done such a hot job of keeping up with the blog this year.  And I am not making excuses for it, whatsoever.  2013 has seen a lot of joys, challenges, triumphs and defeats.  But I feel like our little family lived every moment of it all. 

With the holiday season upon us, kicking off with Thanksgiving this week, I thought it would be appropriate to quickly reflect on what I am thankful for, from what I learned this year.

  1. I am thankful for Mike.  We celebrated our 10-year wedding anniversary this year.  And I was reminded how much fun we have together.  We took a trip up north to Door Co, and laughed the entire time.  This trip came after a rough few months earlier for us as a family.  But through adversity, we came together with strength, commitment and a lot of humor.  Can’t ask for much more!
  1. I am thankful for my growing boy.  As he gets older, he is gaining more confidence, independence and his own way.  We are seeing more and more his sense of humor, his likes and dislikes, and the desire to do things on his own.  Since he started Kindergarten this year at “big school,” it has been amazing to see this growth.  He is learning to make friends; he is trying so hard in everything he does.  I worry as he gets older the factors of adolescence.  Growing up is hard.  I can’t even imagine the outside factors we have ahead of us.  I can only hope for acceptance, tolerance and of understanding.  But I’m also excited to see who this little man will become.

  1. I am thankful for the system.  The system?  Yes.  The school system that is giving our son support that he needs, even if we have to push a little for it.  And for our health insurance that pays for his advanced therapy.  And for the people that work to help him so much.  Without these systems, we would be alone and in the dark.  And we’ve met so many wonderful, good people along the way. 

  1. I am thankful for those that came before us, to fight for assistance where it’s needed.  Sometimes I don’t feel like a “Warrior Autism Mom” because the people that came before me have set up such a positive path.  I still fight where I need to, but knowing I don’t have to fight as hard, and can concentrate on my family makes things that much easier.

I could keep going, but I haven’t blogged or written down my thoughts in a long time.  So I’m a little tired, yo!  Until next time!

Sunday, September 15, 2013

Sometimes I wish I was Leslie Mann

We are two weeks into Big School. He has been doing great.  I love his teacher.  She seems to get him, and helps him. 

I'm struggling a bit with his special services at school, but it is the beginning of the school year, which I know is a hectic time.  But I hope for some constancy soon. 

He is so wound up by the end of the day.  Poor kid... he goes to school all day, and then has therapy until 6:45 everyday.  It is a full day for anyone.  And he just wants to stay up and sing, yap, dance, read, etc.  I think by having a new routine for the fall, he thrives... and it is hard to settle.

I did have a little boy in his class tell me I have a mean kid.  That my kid pinches the teachers.  Well, I already knew that.  My friends at work told me I should have gone all "This is 40" on the kid.

Honestly, it was funny, because this same kid told me the day before that Jonathan has his friend, and gave him a hug. 

But all in all, we are all getting used to our new routines and new schedules. 

Sunday, August 4, 2013

Change is in the Air

Our little blog received a bit of love from  And after realizing it had been since May since an updated post, I knew I was woefully behind.

But what to write about?

Our family seems to be in that in between time.  That time where you know change is going to happen soon.  You can see it coming from down the road.  There is nothing you can do to stop it.  You have to just wait and enjoy the ride.

I felt this when I was pregnant with Jonathan.  When we were getting ready for our big move to Wisconsin.  And now again.  This time.... Kindergarten.

Our son has been attending the same preschool since we have moved to this area.  He was 2 1/2 when he started.  He will be six at the end of this month.

We've been preparing for a while.  We had his IEP (Individualized Education Program) worked out with the school system in March.  We've meet teachers and educators at the school.  We talk about "big school" daily.  He knows the first day of school date.  He knows some friends that will also be there.

But he also thinks we will only be visiting Kindergarten, getting back into the blue car, and going to his current classroom at the preschool.

It is getting close to the time I need to write the official social story about "big school."

I've been purchasing the school supplies, noted off the cryptic list his school sends out. Yesterday, while at Target, everyone and their mother were in my way, down each aisle, while I tried frantically to figure out which pre-sharpened pencil brand I needed to purchase.  (Seriously, a family had three generations buying school supplies were in my way!)  I wanted to run in tears.

How can he be this big for school supplies already?  He is no longer a baby, toddler or tiny tot.  He is a school-ager.  He is tall.  He looks like a big boy, with his missing front tooth.  His clothes size no longer match his age, but rather are marked as small, medium or large.

And I worry.   I'll always worry.  It is the unknown that scares me the most.  Will be make friends?  Will other kids like him and be as patient with him as his preschool peers?  Will he be able to keep up to academic expectations?  Will he like school?  Will he like his teachers?  Will his teachers get him?  Will he always be so innocent and lovable and affectionate?

But I need to remember...this is not about me.  This is his journey.  I'm only there to gently guide.  It doesn't make it any easier, does it?

Big Boy walking our neighbor's dog.  What a good helper!

Sunday, May 26, 2013

Love and Luck: Why I Feel Fine After This Ectopic Pregnancy

“You’re pregnant.”

Those were the words the ER nurse told me on May 11th, as I lay in the hospital bed.  My husband took me to the ER two hours prior because I was in so much pain. 

“Pregnant?  I don’t understand?  How is that possible?”

Mike looked at me.  I burst into tears.  Why couldn’t this be easy?

We’ve never been the couple that got pregnant at the snap of the fingers.  We have struggled.  We’ve been struggling for a long time.  I had all but given up.

But now. A glimmer of hope.  But it didn’t feel right.  After all, I was in the emergency room.

I went to the ER because of abdominal pain.  Something hadn’t been right for about a week.  But that day, I couldn’t stand.  I couldn’t use the bathroom.  Turns out my bladder was too full.  My body was calling out S.O.S!

We went home that day, with the news that I was pregnant.  I was to go to my Doctor on Monday to see if my hormone levels increased the way they needed to.  To see if there was a viable pregnancy in there. 

“If all goes well, and I hope it does…”  We said that the next day.  It was Mother’s Day. 

Seven years prior, before Jonathan, we celebrated Mother’s Day for the first time.  I was pregnant.  It took us nine months to get to that point where there were two blue lines on the test.  We told our Mothers.  We were excited at the possibilities of actually being parents.  That ended on Memorial Day when I was rushed to the Operating Room.  The pregnancy was in my tube.  Ectopic.  There was nothing they could do but get it out. 

Five months later, we were pregnant with Jonathan.  We remained cautiously optimistic until we actually saw him on the ultrasound.  We struggled and now we had been rewarded with this gift.

After Jonathan was born, I thought we could have more.  We had always wanted two kids.  Birth control went out the window while my four month old slept in his crib.  My body would be ready, I thought.

And then nothing.  No more blue lines on the test. 

I didn’t want fertility to become a member of our family.  So we were off and on.  Happy to keep trying, ambivalent if it didn’t happen.  Mike and I didn’t want anything invasive.  We had our boy.  We didn’t want to be greedy or press our luck.  If it happened, it happened. 

It didn’t happen.
I shelved that dream.  And I was actually OK with it.

At the doctor’s office on Monday, I went alone.  Mike had to pick up Jonathan at school.  Life needed to keep going. 

There was no life inside me.  Nothing.  It was Ectopic again. My second Ectopic Pregnancy.

No need to rush to surgery this time.  We found out pretty early.  So they treated me with shots.  Shots of chemo, but shots none the less.  This would work.  And in a week, I would come back, things would be working the way they should, and we can get on with our lives. 

I went back the following week.  It was still there.  My levels didn’t go down enough.  I needed another shot.  Why couldn’t my body cooperate?  Why couldn’t this be over?

By Wednesday morning, almost two weeks after getting the news of this pregnancy, I was still in pain.  I didn’t feel right.  Mike took me to the ER that morning.  My Doctor, Mike and I decided, we needed to get this done.  The shots were a great effort, but the tube needed to come out. 

It was the same tube that gave me trouble last time. 

If we took it out, I wouldn‘t ever need to worry about it causing this problem again.  I had a choice.  And I chose to move forward. 

By then, the reality of an actual baby was gone.  It didn’t seem real to me.  I had mourned for two weeks prior.  I had a five year old at home who was scared because Mommy didn’t feel good. 

And so people stepped forward to care for us.  Wonderful people changed their plans to help keep Jonathan’s routine normal while Mommy was in the hospital.  They picked him up from school.  They stayed while he had therapy.  They made him dinner.  They put him to bed.  They made us dinner.  They sent flowers.  They held Mike’s hand.  They held my hand.  They sent love and light and good wishes. 

And Jonathan knew Mommy was OK.  The Doctors made Mommy better. 

All of this made me remember what a precious gift life is.  What a miracle it is to create life.  That my five year old, despite his struggles, his Autism, is the most amazing and special gift I have ever received

Yes, I feel like my body failed me.  And we discovered why we’ve had so many struggles over the years to have a baby.  Turns out there was more going on inside me than I knew.  And I mourn that I can’t give my husband another child…at least naturally. 

But Jonathan.  Wow.  Mike and I are the luckiest. 


Sunday, May 19, 2013


It is late.  I'm trying to get him to sleep.  It is already an hour past his bedtime, yet he is wired.  I lay down beside him, and in my calmest voice, tell him to sleep, while I stroke his back.

He pops up, looks at me and says, "And tomorrow will be Monday.  We will have muffins for breakfast.  And on Tuesday, we will have blueberry bread for breakfast.  And on Wednesday, we will have french toast sticks for breakfast...."
He told me the entire breakfast menu for his school for the next upcoming two weeks.  Then the lunch menu and then the snack menu.

I thought, he couldn't know this.  I got up.  Went to take a look at the copy we have.  And sure enough, he was right.  He memorized the menu. He even was clear to say, "on Monday we will be closed for Memorial Day."  Yup.  It said exactly that on the menu.

See.  Totally something to get excited about.

He makes me laugh.  His obsessions are odd, random, and often hilarious.I've even called them quirky.
Here they are, in no particular order:

Blue Car
Lightpole (specifically the one across the street from his school)

hark!  i see lightpole!

Signs (aka, traffic signs at the busy intersection near our neighborhood)
The Calendar
Yellow Milk 
Trader Joe's Elevator.  Making sure we have a silver suitcase with us when we see elevator.
note the silver suitcase.  it comes with us every shipping trip.  we tell people there is a million dollars in there.

Carnival Rides
ironically, all these pictures were from this weekend alone!

His quirky, funny obsessions just make him who he is. 

Sunday, April 7, 2013

Thoughts on Autism Awareness Month

Our event on March 30th was a success!

My kiddo was a rockstar of his own.  He transitioned so well during the week in Ohio, meeting and seeing lots of unfamiliar people.  I was so proud of how well he did.

It was a true family reunion.  A friends reunion.  A band reunion.
And we raised almost $5,000 for Autism Speaks.

I was so proud to be a part of the event, and so humbled by all the support.

When the band decided to reunite and make it a fundraiser for Autism, I had a hard time deciding which organization to support. Should we go more local?  But with members living in Ohio and Wisconsin, who's local were we talking about?  Also, I knew people would want to support, even if they couldn't be there.  So online donation opportunities was a must.   That is how we decided to support Autism Speaks.  They have nationwide support system, and a broad usage for monies raised.

However, I had a true realization.  The realization of how polarizing the Autism community can be.
With April being Autism Awareness Acceptance etc Month, I've read a lot of other people kind of poo pooing Autism Speaks and the "Light it Up Blue" campaign.

As parents of children with ASD, yes, we are aware of Autism ever day, of every month, of every year.   And I'm sure some breast cancer patients don't want to wear a pink ribbon, or have that color represent them.  The month of April can be daunting. But Autism is daunting. Cancer is daunting.  Hell, sometimes getting up to go to work is daunting!

What I want to say is, I don't think it is fair for others to be so judgmental of an awareness campaign.  It is one step.  And all of us are in various parts of our journey.  So yes, I agree that Autism education is needed, as is Autism research, and Autism support, and Autism respite, and Autism therapies for so many children in need....  We, as parents, ARE aware.  But others really are not.  And the only way for these other needs to happen are if others are aware.  It is not Autism Pity Month.  It is the need that in the future, 1 in 88 ADULTS (today's children) will have struggled in their childhood to be able to have a conversation, to be heard and to be who they are.  And those 1 in 88 adults will be looking for work and struggling to navigate their world.

So for now, I support anyone and any organization that is willing to do work for our kids.  Whether it be Autism Speaks or a local organization to help kids get iPads or help pay for therapy for those that need it. 

I'm aware...aware that our struggles are not ours alone. 

Sunday, March 10, 2013

Marching into IEPs, Benefit Shows and General Play Time!

March has been busy, fun and overwhelming!
Here is a quick update on us.


We had his Kindergarten IEP meeting. 
A dozen adults sitting around the table.  Half his current school therapists and teacher, the other half his next year therapists and (possible) teacher.  Plus Mike and I.
It was like an introduction... THIS IS JONATHAN.
They read his current report of how he is doing.  And then we assessed what support we could use for next year.

It went so well.  

Everyone seemed genuinely interested in helping him transition to "Big School."  We took notes on ways to help him over the summer.  We planned on what the first month of school will look like.  The teachers asked about current peers that knew him, to see if they were registered for Kindergarten yet and took notes.

It was not a fight.  It was a discussion.  It laid the ground work for our team for next year.

And I have hope and less anxiety about it.  At least for now.


Jonathan and I leave for Cleveland in a few weeks for the big benefit show
And it has not only become a band reunion, but a FAMILY reunion.
My brother is coming from Nebraska.
My Aunt and cousins are coming from California.
My cousins are coming from Maryland.
Close friends are coming from Columbus, Wisconsin and Massachusetts.

There has been an unbelievable amount of support and excitement about this show.  And I am just floored, touched and a little overwhelmed.   

So I'm prepping now for the trip, even though it is a few weeks away.  I made my packing list, schedule the car to be checked, and am outlining Jonathan's book.

Cleveland or Bust!  I can't wait!!!
My Boys help me practice.  Farley Family Jam!

So my buddy has been playing really well recently.  He is interested in Candyland (even though he cheats), Chutes and Ladders and Uno.  At school, we got a picture sent by the teacher of him building a car ramp with a friend.  And it was reported that they played together like that for 20 minutes.  I guess Jonathan had a hard time initiating the play, but the peer asked him, "Do you want to play with me?"  To which Jonathan replied, "Yes!"


Jonathan has also been going to a social skills class once a week with other kids on the Spectrum.  He has been pretty quiet the previous few weeks, but this last week he was calling the other kids by their first name and saying the scripted sentences that he leaned, "I had a fun time with you playing ball!" 


He continues to communicate with Mike and I more and more about what he is thinking.  Even if it comes out as small, three word sentences.
"No wash hair." 
"I go too?"
"It's Friday!  Last day of school!" - yes... my five year old has discovered the wonders of the weekend.

And he has been reading, reading, reading! 

My boy.  He amazes me!

Sunday, February 17, 2013

Reunting and it Feels So Good!

Once upon a time...ok, more like 12 years ago, I was a singer in a rock and roll band.

Ahh my twenties!  Weekends of gigging.  Performing the 10pm to 2am shift at local bars with my best friends.  Of course back then I was always tired, often grumpy, and really had no clue how wonderful that time was.

Fast forward to today. Being a working Mommy for a special needs kid, working hard at being a good wife, and still trying to maintain a self-identity...I am more exhausted now then back then.  Biggest difference: I know and appreciate how wonderful it all is.

So when the idea of having a band reunion came up, I thought, why not?!

One of the other band members has a son who is also on the Spectrum. And because this show would be more about fun and reuniting, the idea of turning it into a fundraiser seemed to make the most sense.

Now, I have not performed AT ALL since maybe 2006...pre-Jonathan.  So I have some work ahead of me. But have missed singing, more the I really realized.  And now, I feel like I'm singing for a reason.

March 30th at the House of Blue in Cleveland, OH.  A fundraiser for Autism Speaks. 

Click HERE for our Fundraising page.

I will be singing with my son in my mind and heart. He inspires me so much.  It feels amazing to be working towards something so positive and with purpose and passion.

Feel free to donate towards the event, if you are so inclined. The fundraising page is for those that would not be able to make it to the show, or for those that purchase tickets, but want to donate more. All ticket sales will go to Autism Speaks as well.

Life is good.

Sunday, January 20, 2013

More Mommy Appreciation

It's been a while since my wife, Jonathan's mom, went on a business trip or girl's weekend.  This weekend she is, and she's running a half-marathon in sunny Phoenix, Arizona while Jon Jon and I are curled up in our warm house while the temps hover around 10 degrees with plans to dip below zero in the next few days. 

This is also one of those times when I realize just how much Jen does for Jonathan, and how much she does around here.  And we both appreciate her more than we can usually say. 

It also says a lot that of all the books Jonathan has, the ones he wants read to him at night the most are the social stories about our family, and specifically about times like this to help him understand that Mommy isn't going to be home every day--that life includes business trips and other events that throw routine out the window.  And since most kids on the spectrum want structure and are anal retentive about that structure and routine, it's doubly difficult to guide them through the adjustments. Those books are comforting to him and I'm glad Jen takes the time to put them together.

She also quarterbacks a rigorous morning and nighttime routine that requires a several-page manual, right down to the scripted conversation we're supposed to have on the way to school. 

I will say it's nice to have some one on one time with Jonathan, and I think the older he gets, the more he appreciates that time together. 

So today is a day of appreciation for Mommy, as she is running that half-marathon right now.  We are sending vibes of love and good luck, and we also are looking forward to appreciating her in person tomorrow night. 

Wednesday, January 2, 2013

Happy 2013!!

My husband writes a newsletter for his business every month.  The latest one included a cute story about Jonathan with a thoughtful message attached.  I wanted to share.    He says...

"Happy New Year everyone, and welcome to 2013.  Sometimes we learn things from our kids, and sometimes they do things that inadvertently send us subliminal or not-so-subliminal messages.  Recently our five-year-old son, who has autism, has become obsessed with digital clocks, and in particular with trying to literally turn back time.  The clock may change from 9:31 to 9:32, and he will say “thirty-one!” and change it back to 9:31.  This sometimes will go on for a while, off and on, and as a result I may walk into our bedroom, and the clock may tell me it’s 10:15 even though it’s really 11:20. 
We all joke about wanting to turn back time, and on how time flies, blah blah blah.  But we also accept that we cannot stop time from whizzing by.  What our son taught me is that while that may be true, it doesn’t mean we can’t try, or throw a Hail Mary every once in a while.  Breaking the rules or trying to bend them or somehow trying to alter what we typically accept as set in stone is usually futile, but may someday be exhilarating if we keep at it. 
Where am I going with this?  My son’s message to me, though probably not intentional, is that anything is possible—you just have to try.  There is nothing wrong with asking, “What if?”  (and nothing wrong with having an extremely active imagination, either).  That’s also how some of the greatest music has been created. "
Happy New Year all!!!  Looking forward to a year of growth, celebration and being present in the moment.